Lee Came to the US from the UK looking to try BalanceWear. He had been deteriorating quite a bit the past few months and had great difficulty walking and has balance and mobility issues.

Multiple System Atrophy (MSA) is a rare, incurable disease whose cause is unknown. It currently affects up to .02% of the US population, equally likely to occur in men and women across all ethnic groups. The disease tends to cause initial symptoms in the patient’s 50s, and then rapidly worsens over the course of five to ten years – the patient usually needs the support of an assistive device such as a cane or a walker after only a few years. The earliest symptoms of MSA are similar to the earliest symptoms of Parkinson’s disease; both often begin with slowness of movement, tremor, stiffness, incoordination, and impaired speech. Consequently, it is often difficult to distinguish MSA from Parkinson’s in its early stages. However, unlike Parkinson’s, whose movement-limiting symptoms are caused by the death of nerve cells in a specific, small region of the brain called the substantia nigra, the symptoms of MSA can reflect the death of multiple types of nerve cells in the brain and the spinal cord. Because of the variability in the types of cells that be affected within the MSA diagnosis, a patient’s symptoms generally are classified into one of two types: the parkinsonian type, with characteristics similar to Parkinson’s disease, and the cerebellar type, with characteristics including ataxia and loss of coordination. What both types have in common is a debilitating loss of mobility. Because there is no known cure for the underlying neurodegeneration of MSA, the focus of therapeutic care is on the improvement of the patient’s quality of life by slowing the loss of mobility.

Looks like Lee has new training wheels for the Holidays. We are wishing him the best of luck in his rehabilitation.

Interview: by Sean Noah
Daniela Lee was diagnosed with MS at age 40. The disease limited her mobility and hindered the active lifestyle that she previously enjoyed. But thanks to BalanceWear, she is surpassing the limitations of her diagnosis and reclaiming the activity and independence that she once took for granted.

How did you first hear about the vest as a potential therapy?
I read an article about the BalanceWear balance vest in the National MS Society’s quarterly newsletter. The article described how the vest could improve balance. Given the fact that balance loss was one thing that I had been suffering greatly from, that was enough to get me interested. I looked up the BalanceWear website, and reached out to Cindy.

What was the fitting session like?
Cindy Horn from Motion Therapeutics put me in touch with a very helpful Kaiser physical therapist in Richmond – Judith Fairchild. The fitting session was fast, but also uncomfortable at times – the initial pushing to assess my balance made me dizzy and very fatigued. I had to sit down and rest. Then she told me there were a couple more tests with the vest on. She moved the weights around to places that made sense according to my specific balance issues, and then said that she was going to push me again. I was already thinking “I don’t want to be pushed around again – it’s so uncomfortable!” But then she pushed me and it was a night-and-day difference. I was still a little wobbly, but I didn’t need to reach out and grab her; I was able to catch myself. By the time she finished the testing and figured out exactly where the weights should go, she could push me and I literally did not even move. I could just stand there. It was beyond what I was expecting! Furthermore, my dizziness and fatigue were both gone – I had recovered within ten minutes from my initial discomfort. It was a very positive experience with BalanceWear right away.

After the initial fitting session, how did you feel about BalanceWear?
I only wore the vest that first day for ten minutes in her office, but when I got home, the effects lasted all day. I was still walking at 11pm when my husband came home – I didn’t want to go to bed! My husband looked at me and said “you’re really walking normally, I can tell!” I was running up and down the stairs no problem. The next morning, the effects were slowly fading. From then on it was absolutely clear that BalanceWear was something I had to get. It was such an immediate effect. It was an incredibly powerful, life changing experience – I can’t describe it any other way. I felt like I was back to normal, back to how I used to walk. I’ve had issues walking, even before my diagnosis. To get walking back… people take walking for granted. It’s only when I couldn’t do it any more that I realized how important it was, for mobility, independence, and daily life.
What I realized later, once I got my own vest, was “I don’t have to think about how I’m going to take my next step.” Before, I had to map out my path, think about where I would place each foot for every step – even short 20-yard walks felt like the effort of climbing Mt. Kilimanjaro. But with BalanceWear, I feel like I have little motors in my feet.

How often do you wear the vest?
At the beginning, I was wearing it four hours a day. Pretty quickly I realized that I don’t have to wear it every day – I would still have residual positive effects the following day, so I started playing around with it. “How long will the effects last if I wear it for two hours? What about if I wear it every other day? When will I need to wear it next?” It blows my mind how it works, why it works, and how Cindy came up with the idea.

What is it like to wear the vest?
I can definitely tell when I’m wearing it, but it’s not cumbersome. It’s a positive feeling, because the plastic within the belt that goes over the front makes me feel strapped in – I feel that much more secure.
The only negative aspect is that in the summer it gets very warm because you’re strapped in and there isn’t much room for air to circulate. It can get uncomfortably warm. With MS, heat is one of the really negative outside influences – it brings on fatigue and dizziness, so even though the vest is countering your balance issues, you’re still dealing with the dizziness and the fatigue. A lighter vest would solve this problem.

What are you able to do now that you weren’t able to do before BalanceWear?
BalanceWear has absolutely given me a new sense of confidence in my abilities and my potential. I do still have symptoms that are not related to balance, and I’m aware that the vest is not going to fix those – it’s not a panacea. But I can walk normally, even jog. Before, jogging was not possible, but now, I can jog almost a half mile. I can go downtown to the farmers’ market and get what I need, without having to rest in the car for ten minutes before and after walking around. It’s such a simple thing, but believe me, it’s a big step forward.
What advice would you give to people wondering if BalanceWear is right for them?
Get assessed. Try it out, even if just in the PT’s office. You might feel right away if it makes sense for you or not.
I’m very open about my experience with BalanceWear and MS. If people want to get in touch with me, they are welcome to reach out to me, and I’d be happy to talk to them.

Why is it that some physicians feel the need to tell their patient you got this now live with it..there is no hope. What happened to the oath.. First do no harm? By telling someone they will not get better leads patients down a road that they and their families have do not want to go. as professionals we need to be honest. The fact is that many practitioners have not sought out alternative treatment.

In my video of Luke one can see that there is hope and improved function! November 20
Luke came to the US from the UK. The video shows improvement over 4 months.

Why is it that the medical profession feels the need to always cure a disease at the loss of research dollars working on treatments for patients that help them live better? We have research in MS. BalanceWear treats Balance dysfunction; not MS. Anyone with a Balance dysfunction may be helped.

BalanceWear Therapy has helped many people live better, fall less, and have more productive lives.

Why is it that our professions have relied only on evidence that only works in research. Research doesn’t look at the whole patient. It looks at a bunch of people who are not the same and only looks at certain measures researchers think COULD improve.

This is not life. We as clinicians tailor our programs for EACH person.

Please …..Do not let someone tell you to live with it until you have tried other treatments especially BalanceWear. I have heard patients from all over the world tell me no one could help them… They have been helped.

If someone can do something just a little better that is progress. Life can be very difficult for patients suffering with disability. Let’s try to make it easier

Man born in 1935 in Denmark.
Diagnosis: Cerebellar Ataxia
My sickness started slowly back in 2003.
The following 4 years my gait became increasingly worse and I started having speaking problems – especially in the mornings.
Treatment: absolutely nothing ! The neurologist at the Copenhagen University Hospital told me that there was no cure. It was a progressive sickness and the only hope was that due to my age the sickness would most likely develop slowly over the years.

I had to change my living from a big house with many staircases to a protected apartment. My walking problems became beyond endurance with daily falls and lots of injuries as a consequence.
Finally – spring 2013 I was instructed not to walk at all, and was submitted to a wheelchair. Doctor’s order ! By ordering this the doctors would for any reason avoid further injuries to me by falling.
This enormous change in my life style resulted in serious depression, which lasted about 2 months.

Motion Therapeutics (MT)

In my daily investigations in medical literature and information found on the internet I came across a publication from MT offering a balancewear vest.

The problem was that I had to travel to USA if I wanted a vest. I therefore started a market research within the international medical field in order to get more information about the vest. My sister is a doctor, and she helped me in my investigation.
I was in contact with the neurologists at the Copenhagen University Hospital, the University Hospital in Munich, Germany (professor Thomas Brandt who had diagnosed me), the Ataxia Foundation of Denmark and the Ataxia Foundation of UK.

Unfortunately I only received negative feedback. Many had heard about the balance vest but no one believed in its ability to stabilize these types of balance problems.

Meeting with Cindy Gibson-Horn (CGH) – inventor of the vest

Despite all the bad publicity I had obtained I finally decided to try to get an appointment with CGH in San Francisco. She was most obliging and asked me to have a video taking of my gait and send it to her along with the official diagnosis of my sickness.

In spite of my handicap – SAS and my daughter brought me in my wheelchair to the clinic of CGH in San Francisco. It took place October 2013, and it goes without saying, that Cindy (CGH) really took excellent care of me from the moment I “rolled” into her clinic. My daughter and I were

impressed by the efficiency and professionalism of her performance. After having pushed me around and tried to get me totally out of balance for some time, Cindy said the fantastic and unbelievable words “You don’t have to sit in a wheelchair”.

Cindy then started building up a vest, which would suit me and help me in keeping my balance no matter what kind of exercise I performed. We are not only talking about normal walking but I should also walk backwards and to the sides, pick up things from the floor, reach up for things far beyond my natural height etc.

Having “worked” with me for a couple of hours and placed all kind of weights in my vest on various places on my back, shoulder, stomach and front, Cindy told me that she had finished the job and I could start walking. First I tried within the parallel bars, and here I walked normal without falling to the sides or crossing my feet. Then I asked whether I was allowed to try to walk up and down the hall space ?

“You just try”, Cindy said. For everyone who have seen my gait before such as my daughter, we experienced a miracle. I walked without any problems, and I was even able to look to the sides when walking, which I haven’t been able to do for years.

Having embraced and thanked Cindy for the incomprehensible help I walked out of her clinic – leaving my wheelchair behind.

Upon my return to Denmark I swore that I would do my best in order to arrange that BalanceWear would be introduced to the Scandinavian market in order to help other people with balance problems.

If everything goes according to plan I am happy to announce that as from June 2015
Motion Therapeutics, BalanceWear will be available in all Scandinavian countries.

Wonderful! Not only Scandinavians but also other Europeans will then only have to go to Skodsborg Physiotherapy in Denmark avoiding the long travel to USA. If they are successful most likely MT will also have other representatives appointed in more European countries.

I have deliberately postponed this testimonial for half a year. I suppose that everyone will understand that in the beginning I could hardly believe that all of a sudden I was ”brought back to life”. I am so happy to report that since Cindy put on my vest I have become even better. In my home I am now frequently able to walk without the vest and my handwriting and speech have improved. I am more capable to use my computer, and someone might even claim that my intellectual faculties have improved.

On top of all this I am so happy to report (knock the wood) that I haven’t fallen one single time since Cindy put on my vest.

All in all a SUNSHINE STORY. Apart from what I have stated in this testimonial I am only too glad to receive inquiries from interested people. My mail address is: thorkild@erritzoe.com

FINAL PRAISE to CINDY:
Congratulation Cindy for inventing your simple solution to an extremely complex problem, a mechanical balancing of one biologically very complicated imbalance.

From American Physical Therapy Association You are the most important member of your own health care team, and you are entitled to choose the most appropriate health care professional to meet your goals. The American Physical Therapy Association (APTA) has provided the following guidelines for choosing a physical therapist for your care.

Freedom of Choice

You have the freedom to choose your own physical therapist. Most states allow you to go directly to a physical therapist without getting a physician’s referral first. Currently, 46 states allow people to go directly to a physical therapist without a physician’s referral (all but Alabama, Indiana, Michigan, and Oklahoma).

Keep in mind that your insurance policy may require a visit to the primary care physician first or may limit your access to preferred providers only.

Your physician may refer you for physical therapy that is to be provided in the physician’s office, or to a facility in which the physician has a financial interest. If this is your situation, be aware that you have the right to choose your own physical therapist and that you are not obligated to receive physical therapy in any specific facility. Always insist that your physical therapy be provided by a licensed physical therapist.

Physical therapists who are members of APTA are bound by the Association’s Code of Ethics and are especially committed to providing competent and compassionate care.

How to Choose a Physical Therapist

The guidelines below are great. If you are looking for a therapist who practices Balance-Based Torso-Weighting please call 888-330-2289

Make sure that you receive physical therapy from a licensed physical therapist. Physical therapists are professional health care providers who are licensed by the state in which they practice. If you are receiving physical therapy from a physical therapist assistant, be sure that he or she is supervised by a licensed physical therapist.

Ask the physical therapist’s clinic if it participates with your insurance company. Receiving care from a participating physical therapist should minimize your financial responsibility. There may be good reasons, however, to see a physical therapist who does not participate with your insurance plan. If you need a physical therapist who has special skills related to your particular condition-or if the location or other aspects of the care or the facility meet your needs-this may be a good choice for you.

Ask whether the physical therapist’s clinic will submit claims on your behalf to your insurance company. Some policies require copayments for services, and the amount of the copayment will depend on whether the physical therapist is part of the insurer’s provider network. You also will have to meet your deductible. Your physical therapist’s clinic should be able to help you calculate an estimate of your financial responsibilities.

Use Find A PT to locate a physical therapist in your area. Read an explanation of physical therapist degrees and credentials (PT, DPT, FAPTA, etc) in Adobe PDF.

Not all therapists are trained in Balance-Based Torso-Weighting or recognize this treatment. They will in time. Please refer them to our website and do not let them tell you you are not appropriate if they do not know what it is.

I met a gentleman named Mort at breakfast last Saturday. He wore a shirt noting that he had finished a Marathon. His friend wore one that said half marathon. We started talking and found out that they had done marathons/half marathons and were going to be in one the next day…

Noticing a scar on his knee that looked like he had a total knee operation I asked about it. He said, “No that was from tearing off one of my quadriceps. The doctor told me I would never bend my knee. After I finished a marathon I went into his office and handed him my 3rd place metal for my age and a shirt. I told him to keep it for a month. He asked why. I told him to think about what he tells his patients. He should NEVER tell them they won’t be able to do that again! What kind of Doctor does that?”

Mort is 82 and still very active:)

Interestingly, I shared my stories about doctors telling their patients not to come and try BalanceWear, that it is all snake oil or a waste of their money and time. I have actually had a few therapists do the same. Again, who are these doctors/healthcare providers who are not able to help their clients but tell them not to try to help themselves?

A doctors oath http://en.wikipedia.org/wiki/Primum_non_nocere
First do no harm. I understand that physicians may be trying to protect their patient from being scammed. However, that being said, we know if BalanceWear helps with in the first visit. There is no harm from trying. Often their is benefit. I understand we shouldn’t make false promises to patients. We walk a fine line as professionals not to create false hope. However if we do not give patients any hope or thoughts on how to improve many times they will get worse. Is that right?

If you are one of those patients who have seen a therapist trained in Balance-Based Torso-Weighting ask us for a weight. We will send you a half pound to take to your doctor for a paper weight so he can think about why he tells you not to try new developments.

A difference in how one of our instructors trains other therapists to make a difference.

Today – There is a young woman who was in a car accident two years ago who had been in a coma and was in rehab for a long time. She received a free BalanceWear garment via a grant for ataxia.

This young lady will walk to get her high school diploma in So Cal. I am so proud of her even though I do not know her. Her parents will be so happy!

Last week In Kentucky a therapist worked with a young mother of two with MS who needed a walker. Once she had tried Balance-Based Torso-Weighting and BalanceWear was provided she didn’t need the walker. This will help her so much in taking care of her children and running the home.

Self Satisfaction…..
For me it is when I hear about what my invention and intervention does to help others. It gives me a deeps sence of contentment. Better than Yoga! SMILE;)

Starting this year I am interested in adding features about improving overall quality of life and helping you to be the best that you can be. We often become complacent; go to the same restaurant, same park, doing all the things that we typically do… or just stay in and watch TV. If you knew you only had a few years left to live would that be good enough for you? If so you are happy.

For me I want to experience more. There are so many areas in the Bay Area where I live. The picture that I took was from Point Reyes walking down to the light house. In the Sunday Chronicle a few weeks back it mentioned the whales were migrating back through the area. We went to take a look. Yup we saw six of them and new seal pups, deer and elk! We went with friends and ended up having a nice picnic at Drakes Bay. Getting out in the fresh air, breathing in deeply and enjoying the views refreshes my soul. I plan on going to many more sites this year. How about you? What will you be doing? I hope you enjoyed the vista.

Here’s to a great 2014! Can’t wait to hear where the BalanceWear Vest Travels. I will be posting what people tell me. Can’t wait to hear what 2014 brings to everyone!

I have asked people to comment on what they are doing with BalanceWear. As you all know I am the creater of Balance-Based Torso-Weighting and the product BalanceWear.

I have received some very nice reponses. Here is one.

“I’m an active 69-year-old woman who was diagnosed in 2008 with a “significant (25%) relative loss of peripheral vestibular sensitivity in the right inner ear labyrinth … ” The imbalance I felt didn’t get in the way of my enjoying a wide range of activities – hiking, biking, walking, yoga, Zumba and rowing, but I always noticed being out of balance. I felt concern that my balance might be worsening and that I could have serious balance issues as I aged. I was fitted for a BalanceWear garment in July and noted changes on the spot. I was delighted that I could easily do a Tree Pose wearing the vest, and this was not the case when I walked into Cindy’s office. Over the next 3 weeks, I tested myself in a couple of areas while wearing the vest, then recorded the results to see if improvement was real or imagined. The better and better numbers told me it was real. Three months later, after wearing the vest for 3-5 hours for about 4-5 days a week, I thought I’d do another test for fun. I was amazed that I can do many of the “test” activities quite well without the vest. My brain continues to build new pathways for balance. The best result has been a noticeable improvement in my rowing, which takes the form of sculling in a single boat. I’ve been going to a rowing camp every year for 7 years, and it includes an informal race at the end of the week. In September, I rowed my fastest time ever, and it was with less effort than in prior years. I believe that I’m faster because I have a more efficient stroke, and I attribute that to improved balance and the fact that my brain isn’t constantly working to stabilize me in the boat. I’m looking forward to the possibility of new, streamlined models of the BalanceWear garment!”

Exercise class

Exercise class

Causes of Balance and Mobility Impairment in Multiple Sclerosis

Multiple sclerosis is a progressive autoimmune disease typically diagnosed in young adults, affecting the central nervous system causing damage to the myelin surrounding the nerves and lesions in the brain. Although the disease progresses differently in each person often gait and mobility problems are encountered. Individuals experience many different symptoms such as loss of sensation, visual or vestibular function, spasticity, weakness, central processing and motor output dysfunction. Any or all of the symptoms may contribute to a loss of balance leading to difficulty in walking.
If you experience balance problems you should see a physical therapist who is knowledgeable in treating patients with multiple sclerosis. Many people in my MS exercise class partially funded by the MSFoundation find they are able to do so much more than they thought they were capable of. When people get the diagnosis that they have a neurodegenerative disease and experience a relapse many do not rehabilitate back to where they started. With proper guidance many of them are experiencing recovery of function that they thought was unattainable.